Thyroid nodule

Hey Carl, 

Welcome to the forum, though I'm sorry you need to be here. 

So, lots of information to go through here. Let me try and start at the beginning and work my way through.... 

If you progress to getting an FNA done on your nodule, then your ultrasound results become obsolete. If you think of it like a ladder where one step leads to the next, and once you're on that next step then the last one doesn't matter anymore. You get the ultrasound and if it looks suspicious then you get the FNA. 

Thy1, or T1, is neither benign or malignant. It basically means that the sample they took was rubbish and couldn't be processed. Usually what happens is that it bleeds, so blood is taken instead of tissue. After a T1, I would usually expect them to wait a couple of months to let the blood disperse and the thyroid heal, then try again for a better sample. However they don't always wait that long, and a few people have had repeats within weeks. Not sure why they haven't followed you up, any ideas?

Your A+E doctor who is telling you that the lump is now ear to ear. Was this after an ultrasound, or an MRI/CT scan that showed this? Or was this just them having a feel? Also, what took you to A+E?

Nodules can grow quickly, they can grow slowly. Pain is common when things grow in our bodies where they aren't meant to be, because there's no alloted space for them. There are lots of tendons, nerves, veins, etc running up and down your neck. So anything pushing these out of place or squishing them will cause side effects.

Did you ask the consultants registrar or secretary? Either way, sounds like A+E doctor didn't do any scans to go into your file to show this increase in size they noted. As they aren't an ENT doctor, and if they didn't have scans of the neck done, I'd very much doubt that your nodule went from ear to ear. So whoever you spoke to will have been going off your previous ultrasound of the nodule at 9x6x5, and which wasn't causing you pain 2 months ago.

So where are you now? What's their plan for you and what's the next step? 

Lass

Xx

Hi Lass,thank you very much for finding the time to reply

the follow up biopsy was never mentioned 

no further scans or ultrasounds have been done ,the a and e doctor just physically examined me, I have been in a lot of pain with this and painkillers have proved no use

i have left 3 voicemails with the consultants secretary but have had no reply

i have a pre op next Wednesday but was told the waiting list is massive and I could still wait a further 6/9 months for surgery which seems odd

Thanks

Carl

Hey Carl, 

Then I'm sorry to say it, but I think the A+E doctor was talking rubbish. To put it politely.

If they really thought that a nodule had grown so big to extend out to one ear, then cross over the isthmus, then cover the other half of your thyroid, to extend all the way out to the other ear - they'd have had that scanned immediately and called for an ENT consult. You'd also have a neck that looked like you'd swallowed a grapefruit at a minimum, as these tend to grow and swell in every direction, not just side to side.

So if I were you, I'd put that out of your mind as twaddle, and focus on the definites.

How are you trying to reach the secretary? Is it a number you have from a letter, or are you calling the switchboard?

Regarding your surgery date, it does vary from area to area and hospital to hospital. But usually once you have your pre-op then you must have your surgery scheduled within a set time frame afterwards. Otherwise they have to do your pre-op again. This is because part of it is checking to see if you're carrying MRSA, and also to check you're healthy enough to have the surgery. Wait too long, and all the tests done could be out of date. You should be able to find out the guidelines for your hospital on their website. Hopefully. 

What pain killers are you on too? You're better off seeing your GP for pain like that rather than A+E. They'll be able to prescribe you things you need more efficiently than A+E can. Remember, pain killers work better when they aren't taken as a reaction to pain. Also, distraction and relaxation will help diminish the pain too. Pain automatically makes us tense, and tensing actually increases the pain. So you end up in a vicious cycle. If you can try and relax and physically make every muscle and tendon in your neck unwind, things will ease for you. But it will take concentration, especially if you've been tense and sore for  a while.

Lass

Xx

BTW, this is the cancer pathway timelines...... 

The National Cancer Waiting Times Monitoring Data Set supports the continued management and monitoring of the following waiting times:

• A maximum two week wait from an urgent GENERAL PRACTITIONER referral for suspected cancer to DATE FIRST SEEN by a specialist for all suspected cancers
• A maximum 28 day wait from an urgent GENERAL PRACTITIONER referral for suspected cancer to having cancer either diagnosed or ruled out (CANCER FASTER DIAGNOSIS PATHWAY END DATE), or DECISION TO TREAT DATE, whichever comes first, for all suspected cancers
• A maximum 28 day wait from referral for breast symptoms (where cancer is not initially suspected) to having cancer either diagnosed or ruled out (CANCER FASTER DIAGNOSIS PATHWAY END DATE), or DECISION TO TREAT DATE, whichever comes first, for all suspected cancers
• A maximum 28 day wait from a referral to an Assessment CLINIC OR FACILITY following the identification of an abnormality by an NHS Cancer Screening Service to having cancer either diagnosed or ruled out (CANCER FASTER DIAGNOSIS PATHWAY END DATE), or DECISION TO TREAT DATE, whichever comes first, for all suspected cancers
• A maximum one month (31-day) wait from diagnosis (CANCER TREATMENT PERIOD START DATE) to First Definitive Treatment for all cancers
• A maximum two month (62-day) wait from urgent GENERAL PRACTITIONER referral for suspected cancer to First Definitive Treatment for all cancers
• A maximum one month (31-day) wait from urgent GENERAL PRACTITIONER referral for suspected cancer to First Definitive Treatment for children’s cancers, testicular cancers and acute leukaemia
• A maximum 62-day wait from referral from an NHS Cancer Screening Programme to First Definitive Treatment for all cancers
• A maximum 62-day wait from a CONSULTANTS decision to upgrade the urgency of a PATIENT they suspect to have cancer to First Definitive Treatment for all cancers
• A maximum 31-day wait for all subsequent treatments for new cases of primary and Recurrent Cancer where an Anti-Cancer Drug Regimen, surgery or Radiotherapy is the chosen CANCER TREATMENT MODALITY
• A maximum two week wait from referral for breast symptoms (where cancer is not initially suspected) to DATE FIRST SEEN.

Lass

Xx

Hi Lass,I thought they were to be honest ,I am taking 60mg of codeine 4 times a day with a mixture of paracetamol and ibruprofen inbetween

i had the secretaries mobile and office number but still no call back 

is it common for cancer to be diagnosed once the nodule has been removed? Or do I have nothing to worry about 

thank you

Carl

Thank you so much for the help 

I hate codeine, and most of the opiates. The best way I can describe them is to say that while on them, I can still feel I'm in pain.... I just don't care. But that not caring extends out to all aspects of my life. You're better off doing distraction and relaxation techniques and taking the paracetemol and Ibuprofen every 4 - 6 hours. You retrain your mind so that the pain you feel is now your baseline.

Try calling the hospital switchboard. As to speak to the secretary for Dr X. They'll put you through. Though with your pre-op date booked, what is it you want to talk to them about? Also, your GP can always send updates through to the consultant too. So if you or they think there's new information they need to be aware of, your GP can write to them and let them know.

The odds are in your favour that this isn't thyroid cancer. But thyroid cancer is often diagnosed after what's called a diagnostic hemi. I'm not sure what they are classing your op as, but when you fill out the permission form, make sure and tick the boxes on the right. One talks about dissecting the tissue to check for things, and one talks about storing tissue. The doctors don't always tick them, and you def want your tissues tested. 

Lass

Xx

Hi Lass, I am having a right hemithyroidectomy, I got through this morning and asked about the thy1 ,they said it was benign but she will speak to my consultant to see if it’s worth re scanning

yeah the codeine do nothing , sorry to read about your ongoing troubles ,I think I probably speak for everyone on here in saying thank you for all your help despite you going through an absolutely horrible period in your life yourself you still find time to help other people

thank you

Carl